As her body succumbed to amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s Disease, journalist Susan Spencer-Wendelwrote her life story. It took her three months to type it, letter by letter on her iPhone, using just her right thumb – all of her other fingers had stopped working by then.
“I cannot lift my arms to feed myself or hug my children,” the 45-year-old mother of three wrote in “Until I Say Goodbye: My Year of Living With Joy,” which will be published in March. By then, she says, she will probably no longer be able to speak clearly.
“My muscles are dying, and they cannot return. I will never again be able to move my tongue enough to clearly say, ‘I love you’,” she wrote. “Swiftly, surely, I am dying. But I am alive today.”
A former courts reporter for the Palm Beach Post newspaper in south Florida, Spencer-Wendel lives in Florida with her husband, John, and their children, Marina, 15, Aubrey, 11, and Wesley, 8. She was diagnosed with the disease during the summer of 2011, and swiftly decided to make every moment count.
Spencer-Wendel, who was adopted, met her birth mother in Northern California and journeyed to Cyprus to learn about her birth father. Before her body could fail her, she traveled to the Yukon to see the Northern Lights with her best friend, Nancy Maass Kinnally, in December 2011; her hands were so weak that Kinnally had to dress her in the heavy-duty cold-weather gear.
“Time to stop dreaming and start doing, I thought,” she wrote of her trip.
She and her daughter, then just 14, went to New York City to pick out Marina’s wedding dress at Kleinfeld’s Bridal, where the TLC reality show “Say Yes to the Dress” is set. Both mother and daughter are fans of the show; both know that Spencer-Wendel will not live to see her daughter walk down the aisle.
“As my beautiful daughter walks out of the dressing room in white silk, I will see her ten years in the future, in the back room right before her wedding, giddy and crying, overwhelmed by a moment I will never share,” she wrote. “When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld’s, ‘You are my beautiful’.”
She and her husband went to Budapest to celebrate their 20th wedding anniversary in May 2012. She wrote about her travels for the Palm Beach Post, where her stories caught the eye of editors at publishing giant HarperCollins. They offered her $2 million for her memoir; co-written with Bret Witter, “Until I Say Good-Bye” is expected to be translated into 25 languages. Universal Studios paid her another $2 million for the movie rights to her story.
But she knows that she doesn’t have much time left.
“My decline is speeding up: each day I lose more steps and words. I now choke at most every meal, episodes which leave people around me screaming ‘Should we call 911?’ Ergo, I don’t eat much anymore,” she wrote in a New Year’s email to The Palm Beach Post.
“I knew it would be this way. So for Thanksgiving we had our major holiday event. Our entire families-40 in all-came. Was wonderful. Hectic, but wonderful,” she continued. “Thus, Christmas is a time just for John and me and our children.”
They celebrated by giving money to their favorite charities, and special “forever” gifts for family members-scrapbooks for her children, jewelry that can be handed down to her future daughters-in-law and grandchildren, personal gifts for her husband and parents. But the most tangible part of her legacy is her book.
“I am writing about accepting, about living with joy and dying with joy and laughing a helluva lot in the process,” Spencer-Wendel wrote on her website. With her memoir, she’s crossing one last item off of her life’s to-do list: “To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.”
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